Health-related quality of life in children with Type 1 diabetes: an RCT of hospital-based care and hospital-based home care at diagnosis
DOI:
https://doi.org/10.1080/20573316.2018.1426257Keywords:
Children, HBHC, HRQOL, parents, Type 1 diabetesAbstract
Introduction:When a child is diagnosed with Type 1 diabetes, it involves extensive lifestyle changes for the whole family. There is limited knowledge of the impact the initial care has for children and parents over time. The aim was to compare children’s diabetes-specific health-related quality of life (HRQOL) in hospital-based care and hospital-based home care (HBHC), 12 and 24 months after the onset of Type 1 diabetes. The aim was also to compare the children’s and parents’ proxy-report of the children’s diabetes-specific HRQOL after 12 and 24 months, regardless of the form of care.
Method: The trial took place at a university hospital in Sweden and had a randomised controlled design evaluating the hospital-based care and HBHC, referring to specialist care in a home-based setting. Children aged 5–16 and their parents answered the PedsQLTM 3.0 Diabetes Module, 12 months and 24 months after the onset of the illness.
Results: The results showed no difference regarding the children’s diabetes-specific HRQOL. However, 12 months from diagnosis, the children and parents who received HBHC experienced more worry than those who had received hospital-based care at diagnosis (p = .012). Irrespective of the form of care, children reported more discomfort of the disease than their parents reported that the children would have (p = .017).
Conclusion: Overall, the result indicates that both hospital-based care and HBHC provide equivalent outcomes in terms of the children’s diabetes-specific HRQOL. However, a more home-based model of care might put more strain on some families. Those families need to be identified and the routines should be flexible in order to meet each family’s need.
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Lowes L, Lyne P. A normal lifestyle: parental stress and coping in childhood diabetes. Brit J Nurs. 1999;8(3):133–39. doi: 10.12968/bjon.1999.8.3.6698
Jönsson L, Hallström I, Lundqvist A. ‘The logic of care’—parents’ perceptions of the educational process when a child is newly diagnosed with Type 1 diabetes. BMC Pediatr. 2012;12(165). [cited 2017 Mars 1]. Available from: http://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-12-165
Swift PG. Diabetes education in children and adolescents. Pediatr Diabetes. 2009;10(12):51–57. doi: 10.1111/j.1399-5448.2009.00570.x
Wennick A, Hallström I. Swedish families’ lived experience when a child is first diagnosed as having insulin-dependent diabetes mellitus. An ongoing learning process. J Fam Nurs. 2006;12(4):368–89. doi: 10.1177/1074840706296724
Wennick A, Hallström I. Families’ lived experience one year after a child was diagnosed with Type 1 diabetes. J Adv Nurs. 2007;60:299–307. doi: 10.1111/j.1365-2648.2007.04411.x
Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management at first year following diagnosis. Diabetic Med. 2004;21:531–8. doi: 10.1111/j.1464-5491.2004.01193.x
Sjöblad S. Pediatric and adolescents with diabetes. A national care program by the Swedish society for diabetology and endokrinology (Barn- och Ungdomsdiabetes Vårdprogram utarbetat inom Svenska barnläkareföreningens sektion för endokrinologi och diabetes) (2:1 ed). Lund, studentlitteratur 2008.
Nardi L, Zucchiini S, D’Alberton F, Salardi S, Maltoni G, Bisacchi N, et al. Quality of life, psychological adjustment and metabolic control in youths with Type 1 diabetes: a study with self- and parent-report questionnaires. Pediatr Diabetes. 2008;9:496–503. doi: 10.1111/j.1399-5448.2008.00414.x
Petersson C, Huus K, Samuelsson U, Hanberger L, Åkesson K. Use of the national quality registry to monitor health-related quality of life of children with Type 1 diabetes: a pilot study. J Child Health Care. 2015;19(1):30–42. doi: 10.1177/1367493513496674
Wagner VM, Müller-Godeffroy E, von Sengbusch S, Häger S, Thyen U. Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with Type 1 diabetes mellitus. Eur J Pediatr. 2005;164:491–96. doi: 10.1007/s00431-005-1681-4
Frøisland DH, Graue M, Markestad T, Skrivarhaug T, Wentzel-Larsen T, Dahl-Jørgensen K. Health-related quality of life among Norwegian children and adolescents with Type 1 diabetes on intensive insulin treatment: a population-based study. Acta Paediatr. 2013;102:889–95. doi: 10.1111/apa.12312
Sundberg F, Sand P, Forsander G. Educational and psychological issues health-related quality of life in preschool children with Type 1 diabetes. Diab Med. 2015;32:116–19. doi: 10.1111/dme.12557
Tiberg I, Steen Carlsson K, Carlsson A, Hallström I. Children diagnosed with Type 1 diabetes: a randomized controlled trial comparing hospital versus home-based care. Acta Paediatr. 2012;101(10):1069–73. doi: 10.1111/j.1651-2227.2012.02775.x
Pihoker C, Forsander G, Fantahun B, Virmani A, Luo X, Hallman M, et al. The delivery of ambulatory care to children and adolescents with diabetes. In: ISPAD Clinical Practice Consensus Guidelines 2014 Compendium. Pediatr Diabetes. 2014;15(Suppl. 20):86–101. doi: 10.1111/pedi.12181
Clar C, Waugh N, Thomas S. Routine hospital admission versus out-patient or home care in children at diagnosis of Type 1 diabetes mellitus (Review). The Cochrane Collaboration. 2007 [cited2016 Oct 1]. Available from: http://link.ub.uu.se.ezproxy.its.uu.se/?sid=Entrez:PubMed&id=pmid:17443539
Ciliska D, DiCenso A, Guyatt G. 12 Quality of life. In: DiCenso A, Guyatt G, Ciliska D, editors. Evidence-based nursing a guide to clinical practice. St. Louise, Elsevier Mosby; 2002. p. 201–221.
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655. doi:10.1136/bmj.a1655 doi: 10.1136/bmj.a1655
Medical Research Council. A framework for development and evaluations of RCTs for complex intervention to improve health. 2000 [cited 2012 Jan 20]. Available from: www.mrc.ac.uk/documents/pdf/rcts-for-complexinterventions-to-improve-health/
Tiberg I, Carlsson A, Hallstrom I. A methodological description of a randomised controlled trial comparing hospital-based care and hospital-based home care when a child is newly diagnosed with Type 1 diabetes. Open Nurs J. 2011;5:111–9. doi: 10.2174/18744346011050100111
Schulz KF, Altman DG, Moher D. CONSORT 2010 Statement updated guidelines for reporting parallel group randomized trials. Obstet Gynecol. 2010;115(5):1063–70. doi: 10.1097/AOG.0b013e3181d9d421
Tiberg I, Carlsson KS, Carlsson A, Hallström I. Metabolic control, healthcare satisfaction and costs 1 month after diagnosis of Type 1 diabetes: a randomised controlled trial of hospital-based care vs. hospital-based home care. Pediatr Diabetes. 2012;13(8):625–31. doi: 10.1111/j.1399-5448.2012.00879.x
Tiberg I, Hallström I, Carlsson A. The influence of initial management and family stress on metabolic control in children with Type 1 diabetes. Int J Clin Med. 2010;1:41-47. doi: 10.4236/ijcm.2010.12008
Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQLTM in Type 1 and Type 2 diabetes: reliability and validity of the Pediatric Quality of Life InventoryTM Generic Core Scales and Type 1 Diabetes Module. Diabetes Care. 2003;26(3):631–37. doi: 10.2337/diacare.26.3.631
Sand P, Kljajic M, Schaller J, Forsander G. The reliability of the health related quality of life questionnaire PedsQL 3.0 Diabetes ModuleTM for Swedish children with Type 1 diabetes. Acta Pædiatrica. 2012;101:e344–49. doi: 10.1111/j.1651-2227.2012.02706.x
Hein IM, De Vries MC, Troost PW, Meynen G, Van Goudoever JB, Lindauer RJ. Informed consent instead of assent is appropriate in children from the age of twelve: policy implications of new findings on children’s competence to consent to clinical research. BMC Med Ethics. 2015;16(1):76. doi: 10.1186/s12910-015-0067-z
Tiberg I, Hallström I, Jönsson L, Carlsson A. Comparison of hospital-based and hospital-based home care at diabetes onset in children. Eur Diabetes Nurs. 2014;11(3):70–74. doi: 10.1002/edn.253
Tiberg I, Lindgren B, Carlsson A, Hallström I. Cost-effectiveness and cost-utility analyses of hospital-based home care compared to hospital-based care for children diagnosed with Type 1 diabetes; a randomised controlled trial; results after two years. BMC Pediatr. 2016:16:94. doi:10.1186/s12887-016-0632-8 doi: 10.1186/s12887-016-0632-8
Sparud-Lundin C, Hallström I. Parents’ Experiences of two different approaches to diabetes care in children newly diagnosed with Type 1 diabetes. Evid Pract. 2016;26(10):1331–40.
Delamater AM, de Wit M, McDarby V, Malik J, Acerini CL. Psychological care of children and adolescents with Type 1 diabetes. ISPAD Clinical Practice Consensus Guidelines 2014 Compendium. Pediatr Diabetes. 2014;15(Suppl. 20):232–44. doi: 10.1111/pedi.12191
Whittemore R, Jaser S, Guo J, Grey M. A conceptual model of childhood adaptation to Type 1 diabetes. Nurs Outlook. 2010;58(5):242–51. doi: 10.1016/j.outlook.2010.05.001
Jönsson L, Lundqvist P, Tiberg I, Hallström I. Type 1 diabetes—impact on children and parents at diagnosis and 1 year subsequent to the child’s diagnosis. Scand J Caring Sci. 2015;29:126–35. doi: 10.1111/scs.12140
Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res. 2008;17:895–913. doi: 10.1007/s11136-008-9350-5
Lukács A, Varga B, Barótfi S, Kiss-Tóth E, Barkai L. Health-related quality of life of youths with Type 1 diabetes: reliability and validity of Hungarian version of the PedsQL 3.0 Diabetes Module. J Diabetes Metab. 2012;3(4). [cited 2017 Mars 28]. Available from: https://www.omicsonline.org/healthrelated-quality-of-life-of-youths-with-type-diabetes-2155-6156.1000191.php?aid=6537 doi: 10.4172/2155-6156.1000191
Hillard ME, Lawrence JM, Modi AC, Anderson A, Crume T, Dolan LM, et al. Identification of minimal clinically important difference scores of the PedsQL in children, adolescents, and young adults with Type 1 and Type 2 diabetes. Diabetes Care. 2013;36:1891–97. doi: 10.2337/dc12-1708
Shadish WR, Cook TD, Campbell DT. Experimental and quasi-experimental designs for generalized causal inference. Boston: Houghton Mifflin. xxi; 2001. p. 623.
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